Fertility Preservation in Women with Cystic Fibrosis Pre-Lung Transplantation Project Summary/Abstract This exploratory study will examine the current state of fertility preservation (FP) counseling for women with cystic fibrosis (CF) from the perspectives of the 3Ps (Patient, Partner, and Provider) with the goal of identifying the gaps, barriers, and facilitators in clinical practice in order to develop FP guidelines for women with CF, broaden their reproductive options, and improve their reproductive health outcomes. This study aims to: (1) explore the knowledge, experiences, preferences, and concerns of women with CF related to FP as a reproductive option prior to lung transplantation; (2) explore the knowledge, experiences, preferences, and concerns of partners of women with CF related to FP as a reproductive option prior to lung transplantation; and (3) explore the knowledge, practices, and attitudes of CF providers related to FP counseling in women with CF prior to lung transplantation. With advances in early diagnosis and management, CF is no longer considered a disease of childhood, and people with CF are living into adulthood, with the average survival age of the mid-40s. Half of the CF population are women, many of whom want to engage in all developmental milestones, including motherhood. For the subset of women with severe lung disease who are being evaluated for a lung transplant, there are no published studies on whether CF providers discuss FP with them. While FP counseling is part of comprehensive care in the oncology population undergoing radiation and/or chemotherapy, there are no clinical guidelines for those with non-malignant conditions. Using a mixed methods design, a cross-sectional survey will be administered to examine the FP knowledge, experiences preferences, and concerns of adult Patients (n=50) and their Partners (n=30), and FP knowledge, practices, and attitudes of CF Providers (n=50). An interview with a subset of Patients (n= 20), Partners (n=20), and CF Providers (n=20) will be conducted to supplement the quantitative results and more fully understand the current state of FP counseling for women with CF and their partners pre-lung transplantation. Findings will inform the development of clinical guidelines and new models for reproductive health care for this population, and guide future studies that include men with CF, their partners, and other health care providers such as transplant, obstetrical, and fertility specialists.
This groundbreaking study will add to our scientific knowledge about the current state of fertility preservation counseling for women with cystic fibrosis from the perspectives of the 3Ps (Patient, Partner, and Provider). This mixed methods research will identify gaps, barriers, and facilitators in clinical practice in order to develop fertility preservation guidelines for women with CF, broaden their reproductive options, and improve their reproductive health outcomes. Findings will inform the development of clinical guidelines and new models for reproductive health care for this population, and guide future studies that include men with CF, their partners, and other health care providers such as transplant, obstetrical, and fertility specialists.
